Story by Dianne Ellis
Myself (Dianne Ellis) and Diane Sommer were both seriously ill for a number of years due to Lyme disease.
We met with Kevin Hogan last week to share our experiences and those of many people who are struggling in the Northern Rivers area.
Diane and I are both very pleased with Kevin’s compassion and interest in this issue and would like to sincerely thank him for going out of his way to strongly support Lyme disease awareness and recognition in Australia.
I met Kevin last year when he introduced himself and volunteered his services to be of assistance in any way possible. He has since spoken to the health minister and is continuing to address this issue and would like to see a lot more research undertaken.
Testing in Australia is proving to be inaccurate, leaving many people with a negative diagnosis while they could in fact be positive for the illness. Some people are paying $1500 for independent testing overseas; but for many this is not a viable option.
Even though red tape seems to be holding up the Australian accreditation process, there are very good reports on the testing used by Australian Biologics which offers a number of tests, starting from around $200.
The biggest concern is the number of people who may be affected by this illness but do not realise it.
Lyme disease, caused by the Borrielia bacteria, can mimic a huge number of diseases and illnesses including multiple sclerosis, motor neuron disease, mental illness, rheumatoid arthritis, Parkinson’s, Alzheimer’s, autism, add, ADHD, lupus, chronic fatigue, fibromyalgia, anxiety, and it has even been linked to heart conditions and stroke.
Typically Lyme disease is accompanied by one or many co-infections such as Babesia, Theileria, Bartonella, Rickettsia, Ehrilichia, Coxiella, Mycoplasma Epstein Barr Virus, Parvovirus, Cytomegalovirus and more.
All of these infections come with their own set of symptoms and, depending of which areas of the body are affected, explains the wide variations of symptoms that are possible.
Diane and I are involved with support groups and in touch with hundreds of people, many whom have an official diagnosis, and others who do not.
We are both very concerned about the number of people becoming unwell, particularly young people who often have a set of symptoms which are the same as people we know who have a confirmed Lyme diagnoses.
For example, there seems to be a number of young people with a bizarre condition in which they have severe muscle symptoms and then spontaneous dislocation of joints.
This has also been occurring in some patients with confirmed Lyme disease. Whilst most people do not have such severe symptoms, this begs the question, ‘How many people are actually being affected but going undiagnosed and untreated?’
Senator Madigan has brought relief and support to thousands of people across Australia who have been celebrating with the news of the senate inquiry into Lyme disease and bullying of doctors in Australia.
Finally there may be some proper diagnoses and treatment of this condition, which has been left to run rampant. The senate inquiry is now open for submissions until March 31.
If your life or that of your family or friends has been affected by Lyme disease, or you suspect it may be, you are invited to make a submission to the inquiry.
For information on submissions, Lyme disease symptoms, diagnoses, and treatment please go to www.lymedisease.org.au
There will be a health support and Lyme disease information evening in Yamba at the Treelands Drive Community Centre every first Tuesday of the month, the next one being March 1 at 7 pm, gold coin donation.
Please feel free to contact Diane Sommer – [email protected] or Dianne Ellis [email protected]